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Newbie! Pre Intestinal Biopsy

JDG
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Go to solution Solved by trents,

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JDG Rookie
JDG
Posted

I have so many questions! But most importantly and the only reason for me at this moment to have the biopsy and know for sure is because I can not imagine the rest of my life without having a Guinness! I have been avoiding it for the last 4 months since my Dr told me my blood test was + for celiac antibodies.

ME: 

" ...... Ok ..... Doc , does that mean I can't drink Guinness because I have never had a reaction from drinking it only from eating rich wheat foods ...."

  DR:

" ... I would avoid it! "

ME: 😰

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  • Solution
trents Grand Master
trents
Posted
  • Solution

So, is you question about whether or not you should have the biopsy or whether or not you should follow the doc's recommendation of no Guinness?

Two things:

1. Don't equate no discernible reaction to a gluten-containing foods with no damage to your gut villi. Many celiacs whose gut villi are damaged seriously do not have gut discomfort. We call them "silent celiacs".

2. If you will be going forward with the biopsy, you should not curtail your consumption of gluten. Within a few weeks of gluten free eating, if the damage to villi is not significant, you could experience healing and get a false negative on the biopsy and thus, a confusing bum steer from the biopsy. So if you are going for the biopsy, "bottoms up!"

Scott Adams Grand Master
Scott Adams
Posted

Unless your appointment for an endoscopy is months out, you should continue eating gluten until all testing is completed. If it is months out you could go gluten-free now, but at least two weeks before you should be eating at least 2 slices of wheat bread per day before it.

JDG Rookie
JDG
Posted
  • Author

Thank you all for responding! Yes I do have it scheduled,  it is not until September 12th! I am counting the days until labor day weekend where I will resume consuming Guinness as well as other wheaty items if I can handle it! I have been gluten-free since Mid March , Now I had my first contamination on July 4th, the diner menu said Gluten Free toast. It wasn't!

Scott Adams Grand Master
Scott Adams
Posted

Let us know how it goes. 

 

JDG Rookie
JDG
Posted
  • Author

Ok I have some.updates on my experience and some questions or advice/2nd opinion. Since my positive antibodies blood test in April 12th 2023 I have been avoiding gluten. All is great, recently I ordered gluten free toast and it appears to not have been gluten free or contaminated or just misplaced, regardless I got very sick within 4 hours of injecting a half piece of toast with my omelette. I recovered fairly quickly within 5 hours I felt fine , I did vomit twice but not much was in my stomach. Now it is 2 weeks later and I am concerned about having to do gluten challenge for my Biopsy in 2 months. I was instructed to attempt to eat equivalent to a half a piece of toast of gluten per day for 8 weeks but told realistically 2 weeks would be enough. I can not comprehend eating that much gluten if it is in bread form, I have discovered I can eat original Saltine crackers with no issue at all. The ingredients say Unbleached whalest Flour. Now I have not tried other food items with gluten aside from bread and these crackers. Are the crackers enough to pass gluten challenge? I am also considering trying Guinness which is Malted Barley, so at least I would have another source defined that I could tolerate. I realize I am new and have much to understand and learn but until I have an accurate diagnosis I would welcome any advice. On another note since January of this year I have eliminated processed foods, with the exception of chicken, or fish and or beef which has to be processed to get to the market but I do choose minimally processed meats and no dairy from a cows milk. 

Scott Adams Grand Master
Scott Adams
Posted

I think you mean unbleached wheat flour, and yes, you can substitute several crackers per day, but to be sure you may want to do ~10 crackers per day for at least 2 weeks before the endoscopy. You can confirm this with your doctor to be sure, but it should not make any difference, and it is strange that you would react differently to wheat crackers than to wheat bread.

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trents Grand Master
trents
Posted
(edited)

Barley contains a fraction of the gluten found in wheat so you'd have to drink quite a bit of Guiness in order to get as much gluten as in bread or crackers. The main difference between wheat crackers and wheat bread is the leavening agent. There's a lot of bakers yeast used to make bread rise. Saltine crackers would have much less leavening agent or none at all.

Edited by trents
JDG Rookie
JDG
Posted
  • Author

Thank you for the replies. I will continue with saltines daily, I enjoy them, unless I start noticing or feeling problems. I will also try a Guinness in good time, After reflecting on the last years and many instances of sickness and nausea with no indication of what was causing it, I have definitely isolated down to some type of wheat allergy. Hopefully not full celiac and hopefully no serious or unreversible damage has been done! Aside from this diagnosis in early springtime I feel and move around great! 

Scott Adams Grand Master
Scott Adams
Posted

Let us know how things go, and good luck!

JDG Rookie
JDG
Posted
  • Author
On 7/13/2023 at 12:50 PM, Scott Adams said:

I think you mean unbleached wheat flour, and yes, you can substitute several crackers per day, but to be sure you may want to do ~10 crackers per day for at least 2 weeks before the endoscopy. You can confirm this with your doctor to be sure, but it should not make any difference, and it is strange that you would react differently to wheat crackers than to wheat bread.

Yes that is correct! I can say that I have ate a sleeve of saltines a day this week, and last week 4 sleeves all week. No issues at all! Still have not tried bread since July 4th when 1/2 a poece of toast knocked me down, but plan to test with bread again at some point. Will do a Guinness test this Friday evening so Ill post over the weekend!

knitty kitty Grand Master
knitty kitty
Posted

@JDG,

Different kinds of wheat contain different amounts of gluten.  

Wheat flour used to make breads (yeast breads, chewy pizza crust) has more gluten in them than other types of wheat flour. 

Gluten in bread flour forms a matrix that captures escaping gas as the dough rises and bakes.  Those big bubbles in the texture in breads are formed because of gluten.

Other types of flour like for cookies, pies, and CRACKERS don't have lots of gluten in them.  The bubbles are much smaller because there's not enough gluten in them to form that gluten matrix that traps big bubbles.

You may be eating wheat crackers, but crackers may not have enough gluten in them to trigger an autoimmune reaction that produces sufficient antibodies to be tested for a clear diagnosis.  

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/

 

trents Grand Master
trents
Posted
3 minutes ago, knitty kitty said:

@JDG,

Different kinds of wheat contain different amounts of gluten.  

Wheat flour used to make breads (yeast breads, chewy pizza crust) has more gluten in them than other types of wheat flour. 

Gluten in bread flour forms a matrix that captures escaping gas as the dough rises and bakes.  Those big bubbles in the texture in breads are formed because of gluten.

Other types of flour like for cookies, pies, and CRACKERS don't have lots of gluten in them.  The bubbles are much smaller because there's not enough gluten in them to form that gluten matrix that traps big bubbles.

You may be eating wheat crackers, but crackers may not have enough gluten in them to trigger an autoimmune reaction that produces sufficient antibodies to be tested for a clear diagnosis.  

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/

 

I would think pie dough, cookie and cracker dough don't rise as much because of less leavening, not because of less gluten.

JDG Rookie
JDG
Posted
  • Author
23 minutes ago, knitty kitty said:

@JDG,

Different kinds of wheat contain different amounts of gluten.  

Wheat flour used to make breads (yeast breads, chewy pizza crust) has more gluten in them than other types of wheat flour. 

Gluten in bread flour forms a matrix that captures escaping gas as the dough rises and bakes.  Those big bubbles in the texture in breads are formed because of gluten.

Other types of flour like for cookies, pies, and CRACKERS don't have lots of gluten in them.  The bubbles are much smaller because there's not enough gluten in them to form that gluten matrix that traps big bubbles.

You may be eating wheat crackers, but crackers may not have enough gluten in them to trigger an autoimmune reaction that produces sufficient antibodies to be tested for a clear diagnosis.  

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/

 

Yes thank you for your response and links. I am learning more and more each day , I guess even though I havent had my biopsy yet, As far as I am concerned I could continue without eating wheat gluten and be fine but I dont want to give up certain food/drinks if unnecessary! But I gues I am confused between celiac which is autoimmune reaction and can lead to other health issues, but if instead of celia I am NCGI, how does that work? Some gluten you cant eat some you cant? How do you know which kind? and if you are NCGI and asymptomatic,  is it damaging your small intestine villi? If it isnt celiac then what is it? I am confused!

trents Grand Master
trents
Posted
2 minutes ago, JDG said:

Yes thank you for your response and links. I am learning more and more each day , I guess even though I havent had my biopsy yet, As far as I am concerned I could continue without eating wheat gluten and be fine but I dont want to give up certain food/drinks if unnecessary! But I gues I am confused between celiac which is autoimmune reaction and can lead to other health issues, but if instead of celia I am NCGI, how does that work? Some gluten you cant eat some you cant? How do you know which kind? and if you are NCGI and asymptomatic,  is it damaging your small intestine villi? If it isnt celiac then what is it? I am confused!

I think you mean NCGS (Non Celiac Gluten Sensitivity) rather than NCGI. We know much less about the natue of the immune system response in the case of NCGS than we do celiac disease. What we do know is that there is considerable overlap in symptoms between the two. We also know that NCGS, when ignored or has gone undiagnosed for years, can cause serious damage to body systems, particularly neurologically speaking. You might want to look up something called gluten ataxia. So, it is commonly assumed that if you have NCGS instead of celiac disease that you have a less serious gluten disorder. But that is a dangerous assumption! Some gluten disorder specialists believe NCGS can be a precursor to celiac disease. Both conditions require lifelong abstinence from gluten. And no, it is not true that some kinds of wheat (gluten) are safe to eat and others not, regardless of whether you have celiac disease or NCGS.

knitty kitty Grand Master
knitty kitty
Posted
(edited)

No.  It's the amount of gluten available to form that matrix that determines how much a wheat product rises.

Yeast is used with glutinous flour to make gases that get trapped in the gluten matrix which form those big bubbles in bread.

Leavening like baking soda can be used to make quick breads, cookies, and crackers, because not as much gas is produced and the glutinous matrix isn't as strong and won't make big bubbles.  

Celiac is an autoimmune response.  It is a genetic response to gluten.  Anti-gluten antibodies will happen no matter what kind of gluten you eat.  All gluten is damaging to Celiacs.  

People with NCGS do not have the genes for Celiac Disease.  They do not produce the anti-gluten antibodies.  Their tummies just get upset when eating gluten.  Gluten outside of the gastrointestinal tract can cause other health problems.

NCGS may be an early stage of Celiac Disease in those with Celiac genes.  So you need a DNA test to tell the difference. 

Many of us don't get a proper Celiac Disease diagnosis unless our villi are observably damaged.  But there are Celiacs who have extraintestinal symptoms (symptoms outside of the gastrointestinal tract) such as Dermatitis Herpetiformis and Gluten Ataxia (caused by anti-gluten antibodies that attack the brain).  

All gluten is bad for Celiacs and people with NCGS.

Edited by knitty kitty
Typo correction
JDG Rookie
JDG
Posted
  • Author
6 minutes ago, knitty kitty said:

No.  It's the amount of gluten available to form that matrix that determines how much a wheat product rises.

Yeast is used with glutinous flour to make gases that get trapped in the gluten matrix which form those big bubbles in bread.

Leavening like baking soda can be used to make quick breads, cookies, and crackers, because not as much gas is produced and the glutinous matrix isn't as strong and won't make big bubbles.  

Celiac is an autoimmune response.  It is a genetic response to gluten.  Anti-gluten antibodies will happen no matter what kind of gluten you eat.  All gluten is damaging to Celiacs.  

People with NCGS do not have the genes for Celiac Disease.  They do not produce the anti-gluten antibodies.  Their tummies just get upset when eating gluten.  Gluten outside of the gastrointestinal tract can cause other health problems.

NCGS may be an early stage of Celiac Disease in those with Celiac genes.  So you need a DNA test to tell the difference. 

Many of us don't get a proper Celiac Disease diagnosis unless our villi are observably damaged.  But there are Celiacs who have extraintestinal symptoms (symptoms outside of the gastrointestinal tract) such as Dermatitis Herpetiformis and Gluten Ataxia (caused by anti-gluten antibodies that attack the brain).  

All gluten is bad for Celiacs and people with NCGS.

Ok so that would inply that having antibodies for celiac in blood would mean you are celiac. But that is not the case, from my understanding people who have gluten(celiac) antibodies present in thier blood durring a celiac antibody blood test,  results in only 95% of those cases end up haveing celiac. The other 5% whose bloodtest were also present for celiac did not have after the biopsy. That is 1 in 20 people! So if you dont need to be gluten free how would you know?

Scott Adams Grand Master
Scott Adams
Posted

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

trents Grand Master
trents
Posted
12 minutes ago, knitty kitty said:

No.  It's the amount of gluten available to form that matrix that determines how much a wheat product rises.

Yeast is used with glutinous flour to make gases that get trapped in the gluten matrix which form those big bubbles in bread.

Leavening like baking soda can be used to make quick breads, cookies, and crackers, because not as much gas is produced and the glutinous matrix isn't as strong and won't make big bubbles.  

Celiac is an autoimmune response.  It is a genetic response to gluten.  Anti-gluten antibodies will happen no matter what kind of gluten you eat.  All gluten is damaging to Celiacs.  

People with NCGS do not have the genes for Celiac Disease.  They do not produce the anti-gluten antibodies.  Their tummies just get upset when eating gluten.  Gluten outside of the gastrointestinal tract can cause other health problems.

NCGS may be an early stage of Celiac Disease in those with Celiac genes.  So you need a DNA test to tell the difference. 

Many of us don't get a proper Celiac Disease diagnosis unless our villi are observably damaged.  But there are Celiacs who have extraintestinal symptoms (symptoms outside of the gastrointestinal tract) such as Dermatitis Herpetiformis and Gluten Ataxia (caused by anti-gluten antibodies that attack the brain).  

All gluten is bad for Celiacs and people with NCGS.

Okay, I am not a cook or a baker but I was using "leavening" and "yeast" in a synonymous way. Whatever, it makes dough rise to one extent or the other. Jews celebrate the Pass Over with unleavened bread which means without yeast since it was not from "starter" dough. Can you link me some information about crackers and pie crust using wheat flour with a lower gluten content? I just consulted with my wife who does the baking in the house and she said she used the same flour for pie crust that she used for bread in the days when she was still baking with wheat flour before my celiac dx.

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Some people don't consume sufficient amounts of gluten before an antibody test and get inconclusive results (that 5%). 

A genetic test will show if you have Celiac genes.  You won't make anti-gliadin antibodies if you don't have the genes.  

The biopsy shows the damage done to the small intestine.  This damage can take years to show up as Marsh Three.  

Not everyone with Celiac has severe intestinal damage.  People with Dermatitis Herpetiformis (TTg 3 antibodies) have skin manifestations.  People with gluten ataxia have TTg 6 antibodies that attack the brain.  The blood test for Celiac disease looks for TTg 2 antibodies that attack the villi lining the small intestine.  

Get a DNA test for Celiac Disease genes.

Edited by knitty kitty
Typo correction
trents Grand Master
trents
Posted
26 minutes ago, knitty kitty said:

No.  It's the amount of gluten available to form that matrix that determines how much a wheat product rises.

Yeast is used with glutinous flour to make gases that get trapped in the gluten matrix which form those big bubbles in bread.

Leavening like baking soda can be used to make quick breads, cookies, and crackers, because not as much gas is produced and the glutinous matrix isn't as strong and won't make big bubbles.  

Celiac is an autoimmune response.  It is a genetic response to gluten.  Anti-gluten antibodies will happen no matter what kind of gluten you eat.  All gluten is damaging to Celiacs.  

People with NCGS do not have the genes for Celiac Disease.  They do not produce the anti-gluten antibodies.  Their tummies just get upset when eating gluten.  Gluten outside of the gastrointestinal tract can cause other health problems.

NCGS may be an early stage of Celiac Disease in those with Celiac genes.  So you need a DNA test to tell the difference. 

Many of us don't get a proper Celiac Disease diagnosis unless our villi are observably damaged.  But there are Celiacs who have extraintestinal symptoms (symptoms outside of the gastrointestinal tract) such as Dermatitis Herpetiformis and Gluten Ataxia (caused by anti-gluten antibodies that attack the brain).  

All gluten is bad for Celiacs and people with NCGS.

KK, are you contradicting yourself here? You say people with NCGS do not have celiac disease but then turn around and say that NCGS may be an early stage of Celiac Disease in those with Celiac genes. Both can't be true.

trents Grand Master
trents
Posted
21 minutes ago, JDG said:

Ok so that would inply that having antibodies for celiac in blood would mean you are celiac. But that is not the case, from my understanding people who have gluten(celiac) antibodies present in thier blood durring a celiac antibody blood test,  results in only 95% of those cases end up haveing celiac. The other 5% whose bloodtest were also present for celiac did not have after the biopsy. That is 1 in 20 people! So if you dont need to be gluten free how would you know?

In addition to alternate celiac disease expressions, like ataxia and DH, that don't involve damage to the SB villi, and in addition to the situation where people have sabotaged the biopsy by already going gluten free before the procedure or at least eating insufficient amounts of gluten, there is the phenomenon of patchiness in the damage to the villous lining such that when the biopsy is performed, samples are not taken from the damaged portions of the bowel. This is whey we recommend that several samples be taken from different parts of both the duodenum and the duodenum bulb. Many scopers fail to be that thorough.

knitty kitty Grand Master
knitty kitty
Posted

https://www.healthline.com/nutrition/high-gluten-flour

And...

Whole-flours from hard and soft wheat genotypes: study of the ability of prediction test to estimate whole flour end-use

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7925757/

 

knitty kitty Grand Master
knitty kitty
Posted
38 minutes ago, trents said:

KK, are you contradicting yourself here? You say people with NCGS do not have celiac disease but then turn around and say that NCGS may be an early stage of Celiac Disease in those with Celiac genes. Both can't be true.

I'm saying many people diagnosed as NCGS may in fact have Celiac, but just don't have intestinal damage at Marsh III (the stage of intestinal damage required to be diagnosed as Celiac Disease).  

A person doesn't develop Marsh III overnight!   

This is why genetic testing is important in people without blatantly obvious villi damage and equivocal antibody tests.  

trents Grand Master
trents
Posted
(edited)
1 hour ago, knitty kitty said:

I'm saying many people diagnosed as NCGS may in fact have Celiac, but just don't have intestinal damage at Marsh III (the stage of intestinal damage required to be diagnosed as Celiac Disease).  

A person doesn't develop Marsh III overnight!   

This is why genetic testing is important in people without blatantly obvious villi damage and equivocal antibody tests.  

But you say, "People with NCGS do not have the genes for Celiac Disease." But if in time they do transition to celiac disease then they must have had the genes. Correct?

Edited by trents

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      NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS

      By MTAC · Posted

      My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds quite regularly and doctors just said she should have her nostrils cuarterized at some point (has had them here and there since a baby - but dad had the same when young so didn't question) Only recently we went to the doctors for tummy pain again and they requested FBC and a coeliac test.  The bloods come back with basically abnormal everything,  lots of lows, high platelets, ferritin, iron level of 2 ug/L  when the range should be 10.3 - 55.8. I was simply told she was anaemic and to take iron - coeliac result apparently hadn't come back at this stage and no follow up from drs.  I called a month later to ask for a copy of her blood test results so I could keep them for my own records, the receptionist of the surgery sent them over and included the coeliac testing results ( I had never heard of them coming back with no update etc)  he results stated - Tissue transglutaminase IgA level (XaJg2) Above range > 250.0 U/mL [0.0 - 15.0]. -  I am STRESSED. I googled a lot and come to terms with maybe they hadn't got in contact because they don't want you to change their diet until further testing had been done? and I was awaiting a paediatric referral.  I then made a doctors appointment for a separate issue (UTI) and upon attending the surgery the nurse mentioned the results briefly (baring in mind this is the first time I would have been made aware of the results) and said because the levels are so high I need to change her diet immediately. I was sent away with no more information but that. I requested a call from the doctor to discuss the results and they said it will take 6-8 weeks for a call back. I find a lot of contradicting advice online and in all honestly I don't know what to do. - Don't stop gluten until further testing done, levels being high so I need to stop immediately. As of late I had cut a lot of processed food/sugars out of our diets and my daughters meals were - 3/4 Weetabix of a morning - cheese crackers for lunch. Who knew I was poisoning her with this food at the time? But ever since I had started on these foods she had'nt complained of a stomach ache once. No other symptoms - she is full of energy, long hair, overall healthy but she is a small frame. I did wonder if she was lacking iron as she had darker undereye but I am also anaemic. I can't help but think of the worse.  - I have another daughter 15 months younger and have requested her to be tested also as what it states on NHS is recommended - Whether they get back to me will be the next hurdle. My plan is to remove gluten from our household completely.  Myself, partner and other daughter can eat it if out of the house but nothing to be had at home with it in. (Of course I would not sit in front of my daughter diagnosed and eat something she can't have). Although I'm hoping to test us all just to clarify further. I don't know where I am going with this, I'm not sure what to do next, is there any further testing I should request or any other things I should be thinking of? At this stage I feel lost with no support and no guidance on what to do now.        
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